She's crashing...

[Buteo]

My poor wife seems to be losing her abilities, herself really, very fast. In just a few months it's become impossible to have a conversation with her and I don't understand what she's talking about most of the time, it just seems to be a kind of random filler. She doesn't understand most of what I say, which is heavily moderated to keep it simple. She gets lost in the house, (it's a small bungalow not Blenheim Palace) she looks at the bath and the toilet as if they're alien spacecraft. Simple things like dressing are getting harder, eating's getting a bit erratic and she's mostly in a world of her own. Luckily I've managed to get some support just in time, but it is shocking and disorienting to see the change almost before my eyes. A year ago I thought maybe I'd be caring for her at home for another five years or so, now I wonder if I'll see out a year.

 

[Jenni_B]

No consolation to you, but my sister is at the same point as you with her husband. She cannot see herself managing to cope for another year. And those of us looking in from the outside agree.

 

[Grannie G]

Hello @Buteo.

If you`ve ruled out an infection it`s a devastating blow. Some people's dementia has a slow progression, some quite quickly and others in plateaus and dips and no one seems to be able to prepare us for what`s ahead.

My husband also got lost in our very small bungalow. He used to stand at the living room door, looking right and left , not sure where to go.

It`s good you`ve been able to get some support.

 

[jenniferjean]

If you`ve ruled out an infection it`s a devastating blow. Some people's dementia has a slow progression, some quite quickly and others in plateaus and dips and no one seems to be able to prepare us for what`s ahead.

A couple of weeks ago I called the doctor as I thought my husbands sudden incontinence was caused by an infection. The doctor also thought this but it turns out that it was just a progression of the disease.

My husband also got lost in our very small bungalow. He used to stand at the living room door, looking right and left , not sure where to go.

My husband is often getting lost in our small flat.

 

[northumbrian_k]

All of that sounds very much like my wife @Buteo. A year ago she was in respite whilst I had a short break. Encouraged by this I booked some more dates right through this year. But she went only twice more as I realised that after 5 years of my care she needed more than I could give. She moved to full time residential care in May. I hope that you can keep on going for as long as it seems right for both of you. But you are right to consider now just how long that can be.

 

[northumbrian_k]

She never got lost in our house but often discovered new rooms that she hadn't seen before!

 

[Buteo]

Thank you everyone, I know it's not just me. Since I posted I have had a long discussion with the memory nurse reporting back the findings of the clinical team. They believe my poor girl is in end-stage dementia (despite being physically fit) and are referring her to Marie Curie nurses. The word palliative was used. I'm sure the last days aren't imminent but it is sobering to think that she now has severe dementia.

 

[PalSal]

My husband is lost everywhere. But he seems to accept it and just wanders around our house, but by the time he finds the room he wants, he forgets why he is there.
The bathroom is a big challenge anywhere but in our house. I have locked the second bathroom and no longer allow him access there as I got so sick of cleaning it up.
But the bathroom has limited our lives. I have decided not to attend a Thanksgiving dinner with friends which we have done for 25 years. and the reason is the bathroom. When he is anxious he wants to go to the bathroom constantly, and does not seem to see the commode properly and may use the sink. It can get messy.
Just another situation which requires acceptance. I could go alone, but it feels like betrayal. I go alone muxh of the time, but Thanksgiving is a family tradition and really some of our oldest friends will be there with their kids and grandkids ( and mine will all be there) and going without him seems too sad.

 

[DesperateofDevon]

Thank you everyone, I know it's not just me. Since I posted I have had a long discussion with the memory nurse reporting back the findings of the clinical team. They believe my poor girl is in end-stage dementia (despite being physically fit) and are referring her to Marie Curie nurses. The word palliative was used. I'm sure the last days aren't imminent but it is sobering to think that she now has severe dementia.

I’m so pleased you have palliative care support- amazing people & the care they provide to you both will be of comfort
Sending love to you both
xx

 

[Buteo]

Thank you

 

[DesperateofDevon]

Thank you

How are things?
X

 

[Buteo]

"Drink your tea," I said, gesturing towards her cup. "Yes," she answered, "it's in my pocket."
Or it's a furious denunciation out of the blue about what an utter ******* I am before returning to normal.
That's pretty standard. Luckily she can just about manage the basics of eating and going to the loo with a bit of help, but everything apart from that is just bizarre. I take a deep breath and try to get on with it.

 

[DesperateofDevon]

"Drink your tea," I said, gesturing towards her cup. "Yes," she answered, "it's in my pocket."
Or it's a furious denunciation out of the blue about what an utter ******* I am before returning to normal.
That's pretty standard. Luckily she can just about manage the basics of eating and going to the loo with a bit of help, but everything apart from that is just bizarre. I take a deep breath and try to get on with it.

It’s the desperate sadness of the situation that is frustrating. A child would be statemented with these issues yet dementia is an classification that means the help required isn’t available to those who require it whether that want it (or not! In the case of my mother/ she’s starting to show resistance again to help coming in!)

 

[Buteo]

It's a tragedy, repeated up and down the country in thousands of homes. How long have we been waiting for a social care Green Paper? Why is dementia a social problem and not a medical issue? I despair.

 

[DesperateofDevon]

It's a tragedy, repeated up and down the country in thousands of homes. How long have we been waiting for a social care Green Paper? Why is dementia a social problem and not a medical issue? I despair.

Surely as it is a medical condition something has to change!